Newly diagnosed in Central CA Valley
Hi! I (28yo/F) was diagnosed recently with the homozygous Cys282T with Iron saturation of 90< %, ferritin 1900-1928 and regular iron is 190 with UIBC is 21 and TIBC 220, which was tested on 4/28.
I have symptoms such a constant and chronic fatigue, weakness of my body, body aches, brain fog and joint pain (usually in my fingers in the morning) plus some stomach pain. I do have depression and anxiety since 2016 but recently 6-8mos of symptoms above crashing on me. I thought it was my anxiety and depression but when I got full blood work done from a new PCP from Dignity Health and my iron levels were through the roof, PCP ordered the genetic test and a specific iron and CBC testing which confirmed the diagnosis in late April.
I got referred to CBCC (Comprehensive of Blood and Cancer Center) in Bakersfield and was seen by an oncology/hematology dr who wrote all my symptoms off, dismissed my high levels of ferritin, and stated only monthly phlebotomy will suffice and keep my diet the same. I felt defeated afterwards and didnt feel seen at all. Now its back to the drawing board with zero answers and feeling stuck and just wanting to feel healthy and on the right track with dealing with a chronic illness for the rest of my life. I let my PCP know I want a second opinion and have not heard back. I did some digging and need a true hematologist that specifically work on liver disorders but no one in Bakersfield has this profession.
Any advice and suggestions of anyone dealing with their own diagnosis in Central Valley and where to go would be great.